People keep asking me how I feel

I really don’t know how to answer it without worrying people.

I go to bed terrified that I will be woken up in the middle of the night, having a dystonic seizure just from trying to get into a comfortable position. I’m afraid that if I roll out of bed, putting my feet to the floor a seizure will start.

I, who used to be able to walk for hours, can barely walk for 15 minutes.  When I walk in public or in the house, I am unsteady on my feet. 

I used to be able to heft Canon body, with the 100-400mm lens on all day photowalks.  Now, I can barely lift the rig for 5 minutes

Cooking?  I can get a bowl of cereal ready, using to hands like a 10 year old.  Boiling water, using sharp knives around someone who could have a seizure?

I feel useless. I still get to do the ‘dirty jobs’ (the cats litter boxes) and can manage laundry if hung up on inside rack.

The medications:  The hardest thing is staying awake. I feel as if I’m in a perpetual  drowse.

Depressed?  Yeah.. you could say that.

About Sandra


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